Awareness of Lichen Sclerosus

I’ve had this for 20 years and at first I put it down to the menopause. Symptoms are either intense itching of the vulva or painful soreness. It doesn’t go away. Mine turned cancerous and was removed by surgery several times. It keeps coming back and has been the bane of my life. Do see a doctor as there are ointments for it and do check in a mirror for any changes,, such as thinning of the skin which has turned white. Not nice!

My teenage g/daughter has it, it took so many yrs for a doctor to confirm this is what it is, poor child has suffered and suffers so much with it, i hope and pray one day they will find a cure for it

Not sure if this forum is still active. I just wanted to add that I have been following a low-oxalate diet for nearly two years. It's not easy. But I have not had to use the steroid cream since. I do occasionally get a flare-up when I cheat in the diet. I mean no chocolate was the hard part. And I had eaten a small handful of almonds with my coffee everyday for 20 years. That's the good part. I can still have coffee. Caution, some sources of low-oxylate are inaccurate.
This diet is common for people who get kidney stones.
Also, my accupuncturist suggested I stay away from bleached cotton pantiliners. So I only wear them when I leave the house. And I wear ones that don't have fibers up against my skin.

I was diagnosed over 5 years ago. It is very mild as I keep it under control with topical steroid creams. Was advised to use once a week even when I don't have the itchiness but it tends to start a flare up if I use it too often. I also think the flare ups depend on what I eat. Apparently high-oxalate foods is thought to be a trigger so I am going to give this a go. The skin is always white, does that ever go away for anyone or is that there forever an does anyone have any other magic creams that work any better.

* Lady1* can you expand on your low -oxolate diet please?
What do you avoid?

Typo low-oxalate.

It's a relief to have stumbled on this 'old' thread and hope some GN'rs can enlighten me on this miserable condition. I'm trying to get an appointment with my GP to take another look at what he'd diagnosed as eczema a year or so ago, prescribing a mild steroid ointment, that doesn't seem to be working.

The unbearable itchy flare ups continue at night, now with worrying lumps added to the discomfort. Also for the last few years I've been having a patchy sore red blotchy inflammation on my hands, flaring up for no reason at night. My GP doesn't seem to know what it is.

This is very much an unknown and little spoken of condition. Only because of looking up vulva cancer (which I had a fear it could be) did I find some reassurance and words of wisdom from others here who suffer from this...'thing'!

I wonder how those GN's who were writing of it a couple of years ago are faring now?

I was diagnosed with LS about 10 years ago by my lovely lady doctor who recognised it straight away and I kept it at bay with steriod cream. However I haven't had a real flare up for some time, just mild itching now and again, and I have just realised that it has been much better since I was also diagnosed with Pernicious Anemia and have been having regular B12 injections. My dentist has also mentioned that my gum health is also much better since the B12 injections started. I also find I can now only wear cotton underwear, anything else will start the itching.

I have it too. Use steroid cream daily to prevent flare ups as advised by consultant. I’ve found a peribottle great - marketed at new mothers but I use to wash vulva and washable sanitary pads to cut down on skin irritation. I have hydromol for washing and moisturising. My gp has a look twice a year to see if there are any suspicious changes.

LyndyLou, do you have Coeliac Disease? Your post made me think of a family member who had severe B12 deficiency found to be caused by Coeliac Disease, and later she was diagnosed with LS. I’m wondering if there’s a connection between the two conditions.